Palliative Care, Dysphagia and End of Life Issues

Maria Quici, MS, CCC-SLP

handsMany hospitals are now seeing the value of palliative care and are assembling their own palliative care teams. Palliative care is specialized medical care for people with serious illnesses. The focus is on symptom management – providing patients with relief from the symptoms, pain and stress of a serious illness – whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.

The palliative care team is made up of doctors, nurses and other specialists (social worker, someone from spiritual care) who work together with a patient’s primary doctors to provide an “extra layer of support. ”  A patient can be referred for a palliative care consult at any age and at any stage in a serious illness. A person receiving palliative care can receive aggressive alleviation of suffering while continuing to receive disease-focused treatment. This is what differentiates it from hospice care. Patients under hospice care are no longer receiving disease-focused treatment; instead, the focus is on making patients comfortable as they transition to the end of life.

Palliative care treats people suffering from serious and chronic illnesses such as cancer, cardiac disease, CHF, stroke, COPD, kidney failure, Alzheimer’s disease, Parkinson’s disease, ALS and more.

Palliative care focuses on the relief of symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite, difficulty sleeping and depression. It enables patients to understand their treatment options, which allows them to have more control over their care and make the best decision depending on their personal beliefs and wishes ( http://www.getpalliativecare.org/whatis/).

The team provides objective, evidenced-based information to help family members decide on the course of care. These decisions can become complicated if the patient has not stated their wishes verbally or in written form, such as in an Advanced Directive or POLST or if family members have different opinions on what should be done (or not done). The team also assists with counseling patients and families and provides education about care options.

The POLST (Physician Orders for Life-Sustaining Treatment) is a form that states what kind of medical treatment patients want toward the end of their lives. It is printed on bright pink paper and is signed by both a physician and patient. It accompanies the patient when they transfer from one care setting to another. POLST helps give seriously ill patients more control over their end-of-life care. It complements an Advanced Directive, but is not intended as a replacement. To view a copy of a POLST form, visit:

http://www.capolst.org/

The POLST should be reviewed periodically, for example, when a patient is transferred from one care setting or level to another, when there is a substantial change in status or if the patient’s treatment preferences have changed.

A patient who is capable of making decisions can revoke a POLST or request alternative treatment at any time. Also, a legally recognized decision-maker can request to modify the orders in collaboration with a physician based on known desires of the individual (or if unknown, the person’s best interests).

POLST addresses the following areas:

A: CPR – attempt or do not attempt

B: Medical Interventions

– Comfort measures only

– Limited Additional Intervention with possible hospitalization

-Full treatment, transfer to hospital if indicated

C: Artificially Administered Nutrition-related

-Offer food by mouth if feasible and desired

-No artificial means of nutrition, including feeding tubes

-Trial period of artificial nutrition, including feeding tubes

-Long-term artificial nutrition, including feeding tubes

D: Information and Signatures

-Who POLST was discussed with (patient and/or legally recognized decision- maker)

-Advanced Directive reviewed if available

– Advanced Directive not available

-No Advanced Directive

-Signed by physician and patient or legally recognized decision-maker

Peggy Kirkwood, RN, MSN, ACNPC, CHFN, AACC, who is the Palliative Care Nurse Practitioner at Mission Hospital in Mission Viejo, CA explains that the palliative care team can assist patients and family members in understanding the different options regarding code status, when this otherwise may not have been made clear to them. For example, in the event of a cardiac arrest, a patient/family can request chest compressions, but no mechanical ventilation (intubation). She also states that the palliative care team can help patients and families comprehend and integrate the information they receive from the many different specialists that may be on the case (oncologists, cardiologists, neurologists, etc), ensuring that everyone is on the same page.

An important component of palliative care, especially when dysphagia is an issue, is the team’s assistance in patient/family communication regarding prognosis and goals of care ( http://www.getpalliativecare.org/resources/clinicians/).

The team can help by answering questions and providing information, including data from current research studies. These studies can offer objective evidence on whether the provision of care/treatment (including feeding tubes) is beneficial or not, especially when prognosis is poor and there is little or no chance of improvement. Sometimes families want “everything done at all costs” despite what the literature says. In some cases, where there is disagreement between the doctor’s recommendation and the patient/family wishes, the case may go on to be reviewed by the hospital ethics committee.

Decisions regarding artificially administered nutrition/hydration can be particularly difficult and emotional for patients and families. Dysphagia is inevitable with certain diagnoses such as dementia as the patient progresses into the end-stages of the disease. A patient with severe dysphagia may be unable to take any food or liquid by mouth, or may be able to swallow only modified foods or liquids but in inadequate amounts. It is at this point that the discussion of feeding tubes may arise. There are instances when tube feeding can be appropriate, (acute CVA, early head and neck cancer) however, for someone in the end-stage of life, tube feeding may serve no benefit and may even cause harm (Bannerman, 2009). In fact, patients who are dying may be more comfortable without the use of artificial hydration (Dunn, 2009).

Quality of life is often the determining factor in deciding whether or not to use a feeding tube. McHorney et al. (2002) found that patients with tube feeding had lower scores on a swallowing – quality of life rating scale than those not on tube feeding. Some patients decline tube feeding because they have concerns about “prolonging suffering by sustaining life” (Sharp and Genesen, 1996). Families will often say that eating is the patient’s “only pleasure in life” and are unwilling to take that away from their loved one, even though they understand the risks of aspiration.

Potential “burdens” of tube feeding are the increased use of restraints, increase in pressure ulcers and the high risk of aspiration (Bannerman, 2009). Patients may be restrained to prevent them from pulling out tubes, however, restraints also limit a person’s ability to move and change position in bed, which can lead to pressure ulcers.

The brochure listed on the link below is a helpful guide to use when determining whether or not to place a feeding tube:

http://coalitionccc.org/wp-content/uploads/2014/01/feedingtube-brochure.pdf

 


 

If a patient and/or family decides against placing a feeding tube at the end-stage of life, there are options. The patient may be offered small amounts of appropriate food for oral gratification with clarification of the risk of aspiration and the understanding that it is not meant to sustain nutrition. A trial of tube feeding may be used for a limited time (Bannerman, 2009). Also, frequent oral care should be offered to keep the mouth moist and more comfortable.

It is important to include family members in the decision-making process so that “every patient and his/her family can make individualized decisions based on their own personal values and their interpretation of acceptable levels of disability“ (Owens, 2009). Speech-language pathologists can add valuable information about the patient’s current swallowing status and prognosis to assist patients and families in this decision-making process.

The palliative care team can be an important part of this discussion, providing education and resources to patients and families so that a patient’s wishes and quality of life are preserved to the greatest extent possible.

 


 

References

Bannerman, C., et al. Managing End of Life Patients with Dysphagia, presented Sept 26, 2009 at Queen of the Valley Medical Center, West Covina, CA as a workshop for the Medical Speech-Language Pathology Council of California.

Center to Advance Palliative Care  at:  www.capc.org

Coalition for Compassionate Care of California  at:  www.capolst.org and www.coalitionCCC.org

Dunn, H. (2009) Hard Choices for Caring People: CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Illness (5th ed.) . Lansdowne, VA:  a&a Publishers.

Get Palliative Care at:  http://www.getpalliativecare.org

McHorney, C., Robbins, J., Lomax, K., Rosenbek, J., Chignell, K., Kramer, A. and Bricker, E. (2002) The SWAL-QOL and SWAL-CARE Outcomes Tool for Oropharyngeal Dysphagia in Adults: III. Documentation of Reliability and Validity. Dysphagia, 17, 97-114.

Owens, D. (2009, May/June) Palliative Care and the Acute Stroke Patient. Journal of Hospice and Palliative Nursing, 11(3), 141-143.

Sharp, H. and Genesen, L. (1996) Ethical Decision-Making in Dysphagia Management. American Journal of Speech-Language Pathology, 5, 15-22.

 

Thank you to Peggy Kirkwood, Palliative Care Nurse Practitioner at Mission Hospital, for her input.


 

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